Guest guest Posted January 28, 2003 Report Share Posted January 28, 2003 It was all too late before some brilliant physician found gastric reflux disease (very severe) in me, and earlier with my kid wcf (of 3, 2 carriers). That may be holding him back and is readily treated with Prilosec (Losec), Acpiphex or Prevacid. The other thing that occurs to me, is that you need to know and have the records of his sputum cultures, and his doctor needs to explain to you what those mean. Although his lungs may sound " clear, " even doctors do not realize that if a cf patient gets a lot of small mucus plugs, or large ones, or has asthma, there is less air movement in the airways and therefore the lungs sound " clear, " but may be clogged or inflamed or both. They did fast ct (computerized tomograophy) scans of my lungs and of my cf childs to be sure that bronchiectasis was not developing; that is scarring, or fibrosing of the airways. It always has seemed to me that scary though it seems at first, and did to my mother as well, the more you know, the better position you are in to advocate for your child and ascertain that he is getting the best care for his present condition. Leads to sleeping better, too! Good luck to you! This list is for just the kind of thing you just posted! n Rojas, wcf, mom of 3 adults: 2 carriers, 1 wcf--all doing well Quote Link to comment Share on other sites More sharing options...
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